Hemangioblastoma survivor grateful for neurosurgeon’s expertise

BY
Meagan Raeke

When the headache started, Tabatha Conway recognized it immediately. Although it had been 20 years since she first felt that headache, she knew what it meant: her brain tumor was back.

“It’s a very specific headache,” Tabatha says. “It feels like blood pulsating towards the back of my head.” It’s a fitting description, because the tumor, called hemangioblastoma, grows from blood vessel cells in the brain.

A stubborn brain tumor

Tabatha’s headaches first began when she was 15 years old. They came and went every few months for four years. Over time, the headaches became more severe, sometimes causing Tabatha to vomit. One day, she woke up and couldn’t walk. Tabatha’s mother took her to the hospital, where she was diagnosed with a brain tumor in the posterior fossa region, near her cerebellum (the brain’s balance center).

Tabatha had surgery and learned the tumor was a grade I hemangioblastoma, a rare, benign brain tumor. She didn’t have any other symptoms or problems until the headache returned 20 years later.

Tabatha’s second brain surgery was in 2005, but this time, the tumor grew back faster. It returned in 2013, then again and again.

“The time between surgeries became shorter and shorter, and the tumor was getting bigger and bigger,” Tabatha says. “I lived in fear. I kept up a cheerful countenance, but I was scared all the time. Every time the doctor said he got all of it, it would come back.”

Preparing for the worst

As Tabatha’s doctor explained, parts of the tumor were too small to see, and those parts kept getting left behind and growing back. Tabatha’s surgeon was worried about damaging her cerebellum and leaving her severely disabled.

“I was preparing myself to hear that they couldn’t do anything else,” Tabatha says. “I was telling myself, ‘It could have been all over when you were 19. At least you got some good years.’”

When the tumor returned in late 2016, Tabatha’s surgeon said there was only one thing left he could do: send her to MD Anderson.

This time, Tabatha’s tumor was growing so big and fast that she temporarily lost the ability to swallow just before surgery. During the 16-hour operation, Dr. Prabhu used image-guided navigation to visualize the tumor and ensure he removed it all.

After the surgery, she felt very hopeful. “Dr. Prabhu said the surgery was successful. He also said it was very, very hard,” recalls Tabatha, who was in surgery from 8 a.m. to midnight. “I feel very grateful that his team didn’t leave; they stayed until they got all of the tumor.”

Finally living tumor-free

One year later, Tabatha’s tumor hasn’t returned, but she’s still dealing with side effects of the brain surgery. Tabatha completed several months of physical, occupational and speech therapy after surgery.

She still uses a walker for long distances about 25% of the time, and when she gets really excited, she struggles to find the words to express herself. She also still has some double vision. “But I’m glad the tumor is gone,” Tabatha says. “I’m very, very grateful.”

Tabatha returned to work as a social worker for the state of Texas in summer 2017. She’s looking forward to the day she can start driving again, and move out of her parents’ house and back into her own home.

Advice to brain tumor patients

“It’s not over until it’s truly over. Look at me – I’m a testament to that,” Tabatha tells other patients. “Keep your spirits up. Get the best doctor that you can. I feel like Dr. Prabhu was a godsend. He really knew what he was doing. His team wouldn’t let me be defeated by this brain tumor.”